The psychological impact of facial changes in scleroderma

Abstract

The physical disabilities associated with scleroderma are well known but the psychological impact of the condition has received less attention. Few studies have examined appearance related issues, most notably of the face. The aim of this study is to evaluate the psychological impact of facial, aesthetic and functional changes in scleroderma. One hundred seventy-one patients with a clinical diagnosis of scleroderma were recruited into the study. Digital photographs were objectively graded into groups based on severity of disfigurement as judged by an observer. Facial movement was recorded using a modified House-Brackmann Grading Scale. Psychological evaluation comprised the Derriford Appearance Scale short-form (DAS), the Noticeability and Worry score and the Hospital Anxiety and Depression Scale (HADS). Severity of disfigurement predicted decreased mouth opening, the extent to which participants judged their appearance as noticeable to others, and the level of appearance-related concern as measured by the DAS24. There was an inverse relationship with age. Facial changes were ranked as the most worrying aspect of the condition. This study shows facial disfigurement impacts on patient with scleroderma independent of functional changes related to systemic disease. The major difficulty is with the perceived noticeably of the condition to other people and the resulting self-consciousness in social encounters.

Psychosocial Aspects of Scleroderma

“…32 Appearance changes in highly visible areas of the body, particularly the face and hands, are common in patients with SSc and contribute to body image distress, which in turn can be associated with symptoms of anxiety and depression. 1,4,[32][33][34][35][36] Several cross-sectional studies have reported that appearance changes of the face, including changes to the mouth, as well as hand involvement, including skin thickening, have consistently been related to body image distress, including dissatisfaction with appearance, decreased appearance selfesteem, and symptoms of anxiety and depression. [32][33][34][35][36] Other appearance changes, including telangiectasias, may also be associated with body image distress.…”

My Approach to the Treatment of Scleroderma

“…Patients’ psychosocial well-being is often affected more by disfigurement caused by facial changes (e.g. telangiectasias, loss of vermillion border of the lip, pronounced vertical perioral lines) and hand contractures than occult visceral disease 122 . Patients with disfiguring lesions can have appropriate cosmetic intervention.…”

Sociodemographic and Disease Correlates of Body Image Distress among Patients with Systemic Sclerosis

“…Nonetheless, existing studies have shown that more severe disease manifestations, such as significant skin changes in the hands, are associated with greater body image dissatisfaction, increased depressive symptoms, and reduced overall psychosocial functioning, including appearance-related anxiety and social avoidance [7]–[9]. One recent study of 171 SSc patients examined the impact of facial changes, and reported that patients rated facial disfigurement as the most worrying aspect of the condition [10], and another study of 129 SSc patients reported that greater objective disfigurement was linked to more distress, worry, and perceptions of noticeability by patients [9].…”